LET’S REFLECT

XI CONFERENCE OF THE ITALIAN POLAND SYNDROME ASSOCIATION (AISP)

Montecatini Terme (PT) NovembeR 5-6, 2016 Hotel Belvedere

 

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This year’s theme “LET’S REFLECT” is intended to be once again an opportunity to meet, debate, reflect and share.

In 13 years of activity, AISP has chosen to go beyond medical-scientific issues, working, instead, to also give relevance to personal, family and relationship matters.
In the same spirit, we are hoping to foster a unity of purpose to share knowledge and experiences in order to give awareness for those who “live” with Poland Syndrome on a daily basis.

LET’S REFLECT: “Beauty is in the eye of the beholder”

Each of us is equipped with an innate ability to relate - from birth - to others, receiving from such exchanges nourishment, affection and reassurance and, in short, gradually learning to live.

While growing up, one’s self-image and awareness heavily depend upon what an individual has received from others he/she interacted with in the course of his/her life and, of course, from experiences that connected him/her to them.

Life is made of continuous and multiple relationships that influence, enrich or impoverish the development of each other’s personality, also contributing to build self-perceptions. It follows that an individual often forms an opinion of the self on the basis of other people's judgment, rather than his/her own ideals or values. The result is that, often, the emancipation from the judgment of others promotes independent and fulfilling goals that were not previously considered (though “dreamed”).

The 2016 AISP conference will be an opportunity for all participants to interact, whether or not suffering from the Poland Syndrome, and compare how an individual sees his/her image, and how he/her perceives to be seen by others. To look oneself in the mirror and go beyond what’s reflected in it is an opportunity to challenge and a moment to be shared with others...

The conference schedule calls for our volunteers (adults and teenagers) to be supported by experienced professionals who will follow participants during meetings and moments of play and pastimes suitable for all ages, including toddlers.

This year as well, the conference will propose manual skills, photography, theater improvisation and many other “hands-on” workshops.

AISP’s commitment to support and promote clinical and scientific research is also affirmed through an event that will take place the day before the start of the conference, namely, a meeting between the members of the Technical Scientific Committee and new clinicians aimed at creating a diagnosis and treatment network across Italy.

Among this year’s objectives, we will move forward with the “Biobank Telethon” project to boost research, and an update on clinical and scientific activities.

The invitation is open to stakeholders, AISP friends, supporters and all those who want to share their experience with us. For obvious organizational reasons, we would be grateful to receive RSVPs from participants as soon as possible (in any case, no later than October 20, 2016).

We hope many of you will come!

The AISP Executive Committee

________________

ADMINISTRATIVE OFFICE

AISP NPO Italian Poland Syndrome Association
Via Asiago, 3r 16137 Genoa

Cristiana Gabriele 329.5412263

Renata Morini 348 9318036 –

Fax 010.8562263
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
Website www.sindromedipoland.org

PROGRAM SUBJECT TO CHANGE

SATURDAY, NOVEMBER 5

XI AISP CONFERENCE “LET’S REFLECT”

9.30 am

GREETINGS AND OPENING OF ACTIVITIES
Welcome remarks from the City of Montecatini

Opening and presentation of the Conference

Prof. Pierluigi Santi, President of the AISP Technical Scientific Committee, Director of the San Martino IRCSS Plastic Surgery Unit - IST Genoa; Eva Pesaro, AISP NPO

09.45 am – 1.00 pm

News for scientific activities: a report and ongoing projects

Prof. Pierluigi Santi, President of the AISP Technical Scientific Committee, Director of the Genoa San Martino IRCSS Plastic Surgery Unit

Meet the Association’s Polish, British, Spanish, French, and German counterparts

Sam Phillighan, PIK UK. Abraham De la Pena, AESP Spain, Nadine Giat,AFSP France, Lucia Ferrandino, German-Polish Group

AISP and the Biobank project, GENETIC BIOBANK TELETHON

how to participate: the carriers of Poland syndrome may participate in the project. Federico Bardi, AISP Biobank Project POC

The pediatrician and rare diseases, The “Poland Syndrome case”

Dr. Franco Rondoni, Director of the Pediatrics Unit of the Città di Castello Hospital

Poland Syndrome: Regulatory update, Disability Law no. 104

Angelo Signoracci, Esquire, Rome

The child: a mirror to reflect upon

Dr. Patrizia Baldrighi, Educator & Educational Consultant - Director of the L'Emile Pedagogical Center, Genoa

Parental anxiety and adaptation to the disease in people diagnosed with Poland Syndrome

Dr. Maria Francesca Bedeschi, Geneticist - UOSD Medical Genetics Unit, and Dr. Santa De Stefano, Psychologist & Psychotherapist - Rare Diseases Unit, IRCCS Foundation, Ca’ Granda Ospedale Maggiore Polyclinic, Milan

Bioethics and informed choices

Prof. Rosagemma Ciliberti, Professor of Bioethics at the University of Genoa

The mirror: Body image and comparison with oneself and others in dealing with Poland Syndrome
Prof. Ilaria Baldelli - San Martino IRCSS IST, Plastic Surgery Unit, Genoa; Dr. Lucia Spada, Psychologist & Psychotherapist, CEMP, Genoa; Roberta Rotondo, AISP Junior Staff

Poland Syndrome and Sports: Experiences on the field

Prof. Filippo Maria Sénès, Dr. Nunzio Catena, Orthopaedic Surgeon, Gianina Gaslini Institute; Igor Cavanna Taekwondo Seoul Academy, Genoa; Corrado Godani Rapallo Swim Center

Shiatsu and psycho-physical balance in Poland Syndrome

Dr. Serena Rusin, Shiatsu Therapist, Sastoon Pietra di Luce Association of Acqui Terme (AL)

Communication in Rare Diseases, The “Poland Syndrome case”

LET’S REFLECT, organized by Dr. Eva Pesaro Genoa AISP President and Dr. Antonella Scotto, Journalist, Genoa

1.00 pm, Group photo
1.00 pm - 2.30 pm, Lunch
3.30 pm - 5.00 pm

 

AISP ORDINARY SHAREHOLDERS’ MEETING

With the following agenda:

• Presentation and 2016 activities reporting

• 2017 Program and activities

• Any other additional business

 

PLAY/EDUCATIONAL WORKSHOPS FOR CHILDREN AND YOUTH

2-5 years 6-11 years* 12 and older
While the conference is in session (with schedule and program TBD at a later time), the AISP Junior Team members, coordinated by educators, will work with teenagers to share their life experiences and wisdom honed over the years within our association

CHILDREN 2-5 years

Game Space - A gentle and safe environment to learn to be together

I AM NOT ALONE A space to express oneself and to enjoy tactile experiences, Hands in the Dough the garden of stories

Experiencing infant massages organized by Dr. Serena Rusin

CHILDREN 6-11 years

Tactile and creative workshops

I AM NOT ALONE A workshop for creative and tactile experiences making crafts while increasing self-confidence
Read and listen: A workshop to read and let fantasy free
Water experiences

A serene activity in a safe environment to promote interpersonal connections

Motor skills activities: let’s learn about Taekwondo with Igor Cavanna

12 years and older: ADOLESCENTS AND TEENAGERS

The Junior staff will encourage meetings and exchanges among young participants

• Theater workshops

• Psychomotor skills and Dancing

• Let’s relax in water

• Motor skills activities: let’s learn about Taekwondo

PHOTOGRAPHY SET

LET’S REFLECT during the conference, participants will be able to be partake in the initiative organized by XV Production UK

 

WORKSHOPS AND MEETINGS FOR ADULTS AND PARENTS

5.00 pm CUSTOMIZED MEETINGS:

Specialists will be available for individual meetings issues under their purview:

• Psychological consult Dr. Lucia Spada, Genoa; Dr. Santa Dr. De Stefano, Milan

• Legal consultMr. Angelo Signoracci, Esquire

• Pedagogical consult Dr. Patrizia Baldrighi

6.00 pm Sports and Qi gong group
experiences

7.30 pm Dinner
9.00 pm Social events

 

SATURDAY, NOVEMBER 6

08.30 am - 10.00 am

BIOBANK PROJECT

Interested families will be able to partake in the project offering their own contribution (availability can be expressed in the participation form)
10.00 am - 11.30 am

GROUP THEME MEETINGS

LET’S REFLECT Images of the body and its acceptance, in relation to others: an open space for parents and adolescents Prof. Ilaria Baldelli - San Martino IRCSS IST, Plastic Surgery Unit, Genoa; Dr. Lucia Spada, Psychologist & Psychotherapist, CEMP, Genoa

LET’S REFLECT - Parent and child: issues of the developmental age: Parents share their experience and provide some advice Dr. Patrizia Baldrighi, Educator & Educational Consultant - Director of the L'Emile Pedagogical Center, Genoa

Communication of the diagnosis and impact on quality of life Dr. Maria Francesca Bedeschi, Geneticist - UOSD Medical Genetics Unit, and Dr. Santa De Stefano, Psychologist & Psychotherapist - Rare Diseases Unit, IRCCS Foundation, Ca’ Granda Ospedale Maggiore Polyclinic, Milan

11.30 am - 12.30 pm

Plenary session

• Conclusion of the AISP conference:

• Presentation of working groups

• Closing of the meeting

13.00 Lunch, farewells and departure

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The following experts will also participate:
Carola Bartolini, AISP Volunteer, Genoa

Ilaria Benvenuti, AISP Junior Staff, Novara

Diego Baldan, AISP Volunteer, Verona
Luca Cannella, AISP Volunteer, Genoa
Anna Cannella, AISP Junior Staff, Genoa

Beatrice Cazzola, AISP Junior Staff, Padua

Erika D’Amico, Member of the Governing Council, Rome

Maria Di Matteo, Member of the AISP Governing Council, Naples
Moniva Eyzantier, Volunteer Educator, Genoa

Cristiana Gabriele, AISP Volunteer, Tarquinia
Cosimo Glielmi, AISP Member and Volunteer
Crescenzo Greco, AISP Junior Staff, Milan

Massimo Masi, AISP Treasurer and Volunteer, Florence
Lorenzo Mellini, Member of the AISP Governing Council, Ravenna
Renata Morini, AISP Member and Volunteer

Andrea Nicchi, AISP Junior Staff, Genoa
Angela Poli, AISP Volunteer Librarian, Ferrara
Roberta Rotondo, AISP Junior Staff, Naples
Nadia Ugazio, AISP Member and Volunteer, Rome

Monica Vigo, Member of the AISP Governing Council, Como

 

GENERAL INFORMATION

HEADQUARTERS

Overnight stay, conference, meetings, plenary sessions and workshops will be held at:
HOTEL BELVEDERE
Viale Fedeli Fedele, 10
51016 Montecatini Terme (PT)
Phone: 0572 70251
Fax: 0572 70252

REGISTRATION

Registration is required for all participants, including children. Children and underage participants will attend free of charge, as costs for their participation will be borne by the Association.

The duly filled out application form must reach the Administrative Office by post, fax or email by October 20, 2016, along with proof of payment of the admission fee indicating: “Participation to the AISP 2016 Conference”.

· Payment can be made on Postal current account no. 53176889

· Or Bank wire transfer in the name of: Poland Syndrome Italian Association, Banco Posta spa
IBAN IT63A0760101400000053176889

PARTICIPATION FEE:

It is a lump sum, cannot be separated, and includes:

• • Overnight stays with full board

• • Conference

• • Customized meetings

• • Workshops and activities as described above

Participation fees were reduced compared to previous years in order to meet the needs of participants. The costs will be borne by AISP.

The following fee is offered to those who plan to arrive on the evening prior to the event.

DETAILS:

From Saturday, November 5, 2016: 1 night

• Adults 110,00 EUR per person

• Free for children/underage adolescents (max 2 children per family) in room with parents

From Friday, November 4, 2016, 2 nights:

• Adults 150,00 EUR per person

• Free for children/underage adolescents (max 2 children per family) in room with parents

Includes dinner and an overnight stays.

AS INDICATED ABOVE, THE PARTICIPATION FEE CANNOT BE DISAGGREGATED.

For organizational reasons, applications must be received no later than
OCTOBER 20, 2016.

ADMINISTRATIVE OFFICE

AISP NPO Italian Poland Syndrome Association
Via Asiago, 3r 16137 Genoa

Renata Morini 348.9318036

Cristiana Gabriele 329.5412263

Fax 010.8562263
E-mail:This email address is being protected from spambots. You need JavaScript enabled to view it.
Website: www.sindromedipoland.org